Megan Webber was introduced to Children’s Hospital Los Angeles in September of 2009 when her second son, Benjamin, then age 5, was diagnosed with Coats disease. His journey would ultimately sparked Know The Glow, which Megan is Co-Founder. She is also on the Advisory Board of The Vision Center at Children’s Hospital Los Angeles and Co-Chair of BrightEyes, a volunteer organization dedicated to supporting the doctors and patients at Children’s Hospital Los Angeles.
“My background is being a mom…I have no formal training in fundraising or working with charitable organizations. After receiving the diagnosis of Coats’ Disease for my son, Benjamin, I was amazed that the one clue to his disease was right in front of me for years and yet I had no idea it was a clue. The Glow in Ben’s photos can be found even two years prior to his final diagnosis and I’d been erasing it in photo shop and ignoring it in photos never knowing that it could be a sign of anything significant.
At the age of five we learned that Benjamin has Coats’ Disease. His disease, while advanced, was treatable but much of his vision was lost in his left eye. We were completely unaware that he had any vision challenges in that eye. The disease progressed so slowly that his other eye had compensated and yet he was virtually blind in his left eye. Upon learning of his diagnosis and then learning that the Glow could also indicate 15 other diseases some of which can be fatal if not diagnosed in time we wanted to raise awareness. What if I’d been erasing the one clue that could have saved not only his vision but his life.
Motivated by friends who were equally shocked to learn of the potential dangers associated with Leukocoria, the Glow, we started to work with Ben’s doctors and the team at Children’s Hospital Los Angeles to build an awareness campaign around the issue. Even though Benjamin was mostly out of the woods we knew there were other children who would not be found without awareness and when we learned that 80% of the time it’s parents who first bring their children to be seen after finding the Glow in photographs we felt it was imperative to focus the campaign on educating parents and other family members who would be photographing children and might see the signs.
We also knew that parents with the more dangerous diseases who would be most motivated to share the warning were also deeply entrenched in fighting for their children’s vision and their lives so we knew it would be hard for them to lift themselves above their circumstances to shout the warning to the world.
Know The Glow was then created in an effort to educate parents and families around the world about the dangers associated with the Glow, but also to let them know that 80% of the time the vision challenges identified through the Glow are correctable or curable if caught in time. We wanted to work to eliminate preventable childhood blindness globally and to do that we needed a team, a voice, and partners.
While 1 in 80 children may present with the Glow before the age of five there are still so many missed diagnoses. We want to let parents know to follow their intuition and to not accept answers if they do not ring true. Our advice to parents who see the Glow in photographs is always “See it Once, Be Alert…See it Twice (and in the same eye) Be Active!”. The Glow is rarely visible with the naked eye and so it is often only through flash photography that the Glow can be seen. As there are no pain sensors within the eye any occlusions or tumors there can rarely be seen without the aid of a camera.
Initially we believed that success would be found in finding just one child with either Coats’ Disease or Retinoblastoma…to save just one child would make all of the work worthwhile. Little did we know that we would soon be finding children with all types of different Glow related diseases and sharing their stories to help find more children at risk. We have been able to help families with Coats’ Disease and Retinoblastoma walk through their diagnosis and find their way to care and we are hugely gratified in knowing that with the help of the Know The Glow campaign their vision has been saved and they will have the chance to see this beautiful world with clearer vision thanks to the work we are doing.
We are motivated daily by the families we speak with, by their strength and determination, and by their hope and belief in the cause. We know there are so many more children still waiting to be diagnosed and we know that we can’t find them alone. We are not afraid to dream big and our team at Know The Glow is comprised of extraordinary members with extraordinary goals. This is a campaign by families, through families, for families and it has been an amazing journey with so much more ahead!”